High Dose Verapamil treatment for 3 y/o

[TForden]

Our Daughter Amy has HCM, but so far shows no outward symptoms. Her septal and free wall are thinkened and she has some mitral regurgitation. Her cardiologist specializes in Cardiomypathy, but not HCM.

People in the medical world have commented on the high dose of verapamil. She takes 270mg time release per day. She seems to tolerate this fine. Was wondering if anyone else with HCM kids has seen this course of treatment. She weighs 31 lbs.

[Sarah]

um, please call Lisa at 973-983-7429 and get info on specialists and the nitty gritty on that dose. I don't know enough about peds to comment except to say "wow. that's high!"

S

[Reenie]

I second calling Lisa. I don't have HCM, but take verapamil for arrhythmias. I'm fully grown and take 240 mg once a day. Sounds awfully high for a small child. Please find a specialist to take her to.

Reenie

[Dee]

Hi TForden :)

My son is 3 /12 also, weighs 32 lbs and is taking 120mg of Propranolol and 60mg of Verapamil a day. He's recently been to see a few new doctors and we've gotten the same response - "WOW, that's a LOT". BUT - it works for him. Especially since adding the Verapamil. I, like you, was very concerned when his previous PC kept upping and upping his dosage of his beta-blocker. After seeing an HCM specialist and getting a new PC who's working with the specialist, this is what they have him on and I'm 100% comfortable with it and can see how well he's doing on it. I'm sure that if we hadn't taken him to see the HCM specialist I'd still be questioning it.

I would highly recommend seeing an HCM specialist if you're not already. I know if you read around on this message board, you'll see that over and over but REALLY...it's well worth the little bit of extra trouble it takes. Each child is different and what works for one might not work for the other, but if you have an HCM specialist who has seen more than just a handful of other kids with HCM treating your child, it really helps erase alot of extra worry! We took Dylan out of state to see one, so if you (or anyone) is interested in how to do this as cheaply as possible feel free to email me.

Dee (who's still on cold medicine and probably blabbing because of it :-) )